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Fibromyagia

Firefly123

Just got diagnosed with this today and given a leaflet and told I should go to a chronic pain clinic
As I'm a carer for 3 young adults with Autism and other mental health issues I'm really worried how will I cope also have Copd, angina and lots of other health problems.
Any advice much appreciated

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Comments

EmmaB

Dear @Firefly123

I sometimes wonder how helpful diagnosis are... and also how much the person giving it to you has taken into account that you clearly have a LOT on your plate caring for 3 young adults with Autism and other health issues of your own?

I wonder how much respite and support you have been getting and whether a lack of respite/support has exacerbated your own health problems and brought you to this point?

It's interesting that now you have a diagnosis of fibromyalgia that you are now worried about how you will cope and yet yesterday when you no doubt had the symptoms you didn't have this doubt... that's what I mean by the helpfulness of a diagnosis, sometimes don't exactly inspire hope.

My guess is that you are a resilient type of person, who has coped, but that now you might find it helpful to start to look at your own care needs to alleviate some of the stress and strain of the role you have - counselling [by a counsellor who knows about fibro] and mindfulness could help.

It is not uncommon for people who are diagnosed with fibromyalgia to have had a difficult background/upbringing that hasn't been dealt with effectively and then in later life they develop the condition; this may or may not be relevant to you but if it is you may find this website helpful: www.wellwise4me.com

I really hope you can put some support and treatment in place for YOU, particularly as you have 3 people who are dependent on you.

Good luck and best wishes.

Emma

Firefly123

Hi @EmmaB
No Ive not had any respite. My oldest does look after them at times so I get a bit of a break.
I was actually worried as this pain has floored me. I guess I thought I would get the results of all the tests and it would be sorted. Wishful thinking..
Been doing so much as am all 3 s appointee and the appointments paperwork stress is never ending. The youngest is the hardest and been excluded so only going to evening school for 2/3 hours so not long enough for me to recharge.
But yes I need to take care of myself to be able to care for them.
Thanks for your reply

EmmaB

Hi @Firefly123

It sounds like your body is trying to tell you something... there's a really good book [bit wordy but good!] called The Body Keeps the Score - talking about how our emotional distress can manifest in bodily symptoms [not just fibromyalgia but all sorts of other medical problems too e.g. IBS].

Have you tried reaching out to specialist organisations such as Contact a Family or the National Autistic Society to see if they have any suggestions as to support / local support?

It sort of feels like you're body has hit a brick wall and is in need a bit of a hand getting over it somehow...

If you have a supportive GP they should [?] know of avenues of support, unfortunately some are not that clued up which is why the organisation route can be better.

Best wishes.

Emma

Firefly123

My GP usually puts all down to me being a carer I only go when I have to and been every few days as its been so bad I could not even dress myself.

Yes I'm going to look and see what support help if any I can get until we get this pain under control. Problem is all is so under funded its a battle in its self and at the moment I can't be doing with that.

Thanks again

debbiedo49

@firefly123 I have fibro. I have one grown up son who helps me when I need it. You have lots of health issues and now this, yes you need help. You need time to adjust and time to heal. Everyone is different with fibromyalgia. With me one small tip of the scales and I am struggling. Good luck.

Firefly123

Hi @debbiedo49 yes just trying to get my head round it all at the moment and stop stressing over everything else.

SJx

Firefly123 said:

Just got diagnosed with this today and given a leaflet and told I should go to a chronic pain clinic
As I'm a carer for 3 young adults with Autism and other mental health issues I'm really worried how will I cope also have Copd, angina and lots of other health problems.
Any advice much appreciated

SJx

Sorry I didnt mean to post your quote I am new to this ?

I just wanted to let you know that your not alone. I am struggling a lot too I have fibromyalgia and ME and two children one is 5 with autism and other is 4 they are a handful .

I've had fibromyalgia for about two years now and I would say just do research on ways that can help like a tens machine. You have to find what works for you as everyone is different.

Best wishes and if you ever need a chat I'm right here ? x

Firefly123

Thank you @SJx yes as carers we overlook our own care needs but this has hit me so hard

SJx

Bless you I can fully understand that and yes I totally agree we do overlook a lot of things when we're a carer and often don't put our needs in there. I often don't get me time and time to relax x

Firefly123

Yes I can totally relate to getting no time to relax. Ive only did the basics that I've had to do but this pain has taken over

debbiedo49

@Firefly123 I can relate to that. Once I got diagnosed after years of chronic pain I kind of went into mourning and had to focus on looking after my pain levels. I’m not sure why but maybe not knowing gave me false hope that the pain would just disappear? Then I began to focus on how other people manage their condition like on here and in my life I started looking at what help is available ( nog much here but still trying) so that I could look at what works for me what doesn’t. Bearing in mind referrals and appointments in NHS can take months and finding out it’s better to apply than put it off. Luckily for me I had already started going out on short walks near my home to help my various health issues and this seems to help my fibromyalgia in some respects. But what I find is you have to work out what’s best for you based on your health. Not anyone else’s. You are the expert in your health. Do your research yes but do not compare yourself to others. I allow myself one day per week or two if I can to just rest and recuperate doing as little as possible. If I feel like doing stuff then I do it. That’s okay for me as I don’t have your commitments. Is there any other help you can get to give you some rest time? If you can, make sure you get some time each day just for you and do something like mindfulness. Or something else that you enjoy. It can be anything.

Firefly123

Yes I think the more I'm getting stressed about what I can't do my pain seems so much worse it's like I'm totally exhusted but can't sleep due to the pain.
No unfortunately my family don't live anywhere near me. My biggest frustration is having to get help just putting my jacket on. Made some phone calls today but don't meet the criteria as funding is so low.

I'm used to it being just me and my kids they are hard work at times but make me smile they are happy having take aways as I've not been able to cook.

Do you find you can be saying something then just go blank?

traceyb1966

I have had fibromyalgia back problems and oesteoarthritis for the past 10 yrs. It is about pacing yourself but with 3 children that is almost impossible. I have a set routine where i can mansge daily life but, put something extra in and i will be on my back and in bed for a few days. Its trying to cope with the flare ups. The memory loss and the fog. I am under the royal national hospital for rheumatic diesease and been doung there course on how to cope. I do push myself until i can do no more which isn't ideal. For the past 5 weeks i have been struggling with a bad chest infection also had lots of tests and examinstions for other things. And have been told because i have fibro it will take a lot longer to recover. Good luck x

Firefly123

I also have Copd angina lots of vitamin deficiencies so winter is never a good time for me but with this in top its been a nightmare. Yes I had to go to a very important meeting as they were threatening to permently exclude her I was in the middle of speaking and then for the life of me could not remember what I was saying that was not a good feeling at all had no idea fibromyagia effects memory. My kids have said for the past year I have dvd amnesia as I can't remember buying or us even watching it.

It's actully rather scary

debbiedo49

Yes I have to write everything down or note on my phone

Firefly123

I am also finding my spelling is getting terrible when it used to be rather good.. Yes writing things down is a good idea.. I do set reminders on my phone to remind me the day before then again a few hours before as can't remember all

debbiedo49

Me too

Firefly123

Yes it's definitely not easy to deal with at all

debbiedo49

I was thinking of starting a diary with positive thought about what I achieved today, no matter how small I think they are so I could look back and think about my achievements instead of thinking what I didn’t do,